No News is Good News!

I hope everyone is having a wonderful summer! So far, we've been very busy visiting family, taking swimming lessons, and playing with friends. A few weeks ago, Emma Kate had her quarterly cardio visit. She did great for her EKG and Echo. Dr. Cardis said her heart function is optimal! We're so grateful that she is doing well, but we don't take a single day for granted. That being said, it is easy to forget that she will need another open-heart surgery.  It's crazy how she defies her limitations!  Emma Kate is one fearless kid. Constantly jumping off the couch, climbing on counters and chairs, running around, swimming, and pretty much everything I never thought she'd be able to do. It's amazing. She keeps us laughing every day and she's such a blessing!

She loves to wash dishes, help me bake and cook, and play with her baby dolls! She told me the other day that she wants to be a mommy when she grows up. I know you will, baby girl.  One of her new found favorite things to do is chew gum. She asks for it constantly. It's so funny to see her chomping away, looking like a grown up. I think she feels grown up chewing it. 

A big milestone we have coming up is Emma Kate's 3rd birthday! So hard to believe that kiddo will be three! She has yet to decide on a birthday party theme. I've asked her several times, and she either says she wants a Caillou party or a Tangled party. (My vote would be for Tangled... and if you know who Caillou is, then you understand why!) I'm sure she would be happy with either!  Another big milestone we have reached is being potty trained. Emma Kate has caught on pretty quickly and mostly wears panties every day. When we are out running errands, I usually keep a pull-up on her still, but she's getting the hang of things and stays dry most of the day! I'm so excited about that. It's mandatory that she is potty-trained for 3K, which starts August 24. And I have a feeling she'll be just fine by then.

I almost forgot; she now weighs 24 pounds!! I'm so excited about that! Looks like the Nutella sandwiches are working!

Having fun on the swings.

She loves the camera!

 Sweet sister.

 Sleeping with Jessie and Daddy.

Last day of swimming lessons!

Pool girls!

She's a little jealous...

...so maybe she thought she could trick me into thinking she was her brother by wearing his bib.

First Day of School

Emma Kate's first day of school was last Thursday 8-26. It turned out to be a great day! She went right into her classroom and didn't look back. I'm so glad she's happy in her class. She loves playing with other children. I really like her teacher, Mrs. Caren. She's also the music teacher for the girls' school. We were given a copy of the class schedule, and it looks like Emma Kate will be kept very busy for the three hours she is there. When I went to pick her up at noon, she was climbing on top of one of the tables! I guess I should have warned Mrs. Caren that she's a little bit of a daredevil. Once we got home, EK talked about school non-stop and kept asking to go back. I'm so excited about this year. I think the hardest part about it will be explaining why Emma Kate can't go to school every day like her big sister!

Cardiology Visit

Emma Kate had a visit with her cardiologist today. She sees him every three months and has an ECHO done every six. This visit was an ECHO visit, which means the last time she had one done she was 16 months old. I remember she cried and screamed a lot during that one, so I prepared myself to expect the same thing for today's appointment. 

Boy, was I surprised! Emma Kate did absolutely wonderful during the EKG! She helped put the "stickers" on her chest and played really sweetly with the Wiggles guitar they usually use to distract her. I'm pretty sure they got a perfectly clear reading of her heart activity. Her sats were between 87 and 89! She was weighed at 20 pounds, 1 ounce.

 

After her EKG, we had a short visit with Dr. Cardis and then it was time for her ECHO. Again, I had prepared myself for a lot of wiggling and crying. But Emma Kate was perfect! I was very pleasantly surprised! The technician commented several times about how great she was doing and how she was able to get such clear pictures. My sweet big girl!

After her ECHO was finished, Dr. Cardis took a look at the pictures and told us that every part of her heart looked great! He went into a lot of detail about each part of her unique heart and said that she is one of the best cases that he follows! That news made Brooks and I tear up a little bit. I was a little nervous before this visit, only because I'm always prepared for hard news. And knowing that she is almost two (and lots of HLHS kids have the Fontan around this age), we wanted to be mentally prepared. However, we were told that potentially she could hold off on having her Fontan done for at least one to two more years, depending on her heart function, energy level and oxygen sats! Praise the Lord! We are so thankful for this news!

At the end of our visit, Emma Kate kept saying, "Doctor. 'Point-ment. Doctor Caw-dis. See you soon. 'Morrow." Ah, she makes me smile. I love that kid and I could not be happier with how today went.

I never thought I'd forget...

... but I almost did. Two years ago, we were shaken. It's so normal to us now; how could we ever not know about this world of heart defects?

We learned about Emma Kate's heart on April 22, 2008. Of course, I never thought I would ever miss that anniversary.  I also never imagined anything would be wrong with any of my babies.  So it came as a complete shock to us when we were told that the left side of Emma Kate's heart hadn't fully developed. My memories of that day and the days following are very dark. There was so much uncertainty in our baby's future and it was very scary.

Have you ever been in a darkroom? I don't mean a room that doesn't have any lights on. I mean a photography darkroom. If you haven't, it's kind of creepy when you first walk in. Your eyes are used to seeing everything that is around you, and then when you go behind the door or the curtain into the darkroom, you can't see anything at all for several seconds. You have to be really careful because you aren't sure of your surroundings. You're not sure where to go or what to do. Slowly, you can see a faint glow and you feel a little better. Your eyes adjust gradually and you can make your way quite easily around the room, even though it isn't your comfortable norm. This is how I kind of relate my experience with learning about the "heart world."

We were taken to a very dark place that day. It didn't feel normal or right at first, and it was really frightening. There were so many unknowns. But slowly, we adjusted to our "new normal." We adapted to things. We learned our way around a little bit, we read and learned lots of information about this new place we knew nothing of before that day. Now, I feel that I can navigate this world a bit more easily. There are still a few unknowns and uncertainties, and having half of a heart isn't something I would ever choose for my child. But it has become our new normal. We know what to expect of our daughter. We know what is normal for her, and most of the time, we know when something isn't quite right.

Quite honestly, I think the reason I forgot our "when-we-learned-about-HLHS" anniversary is because we don't ever think about it. On a day-to-day basis, we don't treat Emma Kate like she has a broken heart. She loves to run and dance and play. She loves to make silly faces and laugh. She's a very loving, sweet girl. She is learning so many new words, and she's talking up a storm! It is Emma Kate that convinces us that we have a normal child. HLHS does not define her, as I had feared it would two years ago. And I am so thankful for that.

Obviously, we are not finished with this journey in the Heart World. We never will be; it is lifelong.  Emma Kate still has to undergo the Fontan (which the doctors are predicting will be when she is around three years old). Some days I have a hard time convincing myself that she will need another open-heart surgery. I think that is because she just seems completely fine. In some ways, I dread those days ahead, but I also have such a peace about them. It's unexplainable. But I know the One who has granted me with such peace. I know my daughter's life is completely in His hands.

And I am so very glad that it is, because I sure do love this little girl. 

(Almost) Wordless Wednesday

If you are my friend on Facebook, you've probably already seen this picture. But I.love.it! Emma Kate is wearing Anna Brooke's t-ball shirt and hat and I think she looks so adorable!

I hope everyone is having a great week!

Nineteen Months Old!

Happy 19 Month Birthday, Emma Kate!

Tuesday and Thursday Emma Kate had her cardiology appointment and 18 month check-up, respectively. Her cardiologist sees her every three months. Since she had an echo last time (she gets them every 6 months), this was just a check-up appointment. She had an EKG, pulse/ox reading, and height and weight measurement. Dr. Cardis thought her heart sounded great and is very pleased with how she is doing. I always feel great after visiting him, because I think he can understand why Emma Kate is small, but he also sees how active and healthy she is! The little princess weighs in at 18 pounds, 10 ounces, she's 30 inches long and her pulse/ox reading was 86.

New this month, Emma Kate is learning to love books. Finally! For the longest time, it was all I could do to get her to sit down and even look at a book for more than five seconds. Now she and I have some serious cuddle time in her rocking chair before bed. We probably read for at least 15-20 minutes. And she always asks for more. It's really fun.

Her verbal skills are excellent! She is talking like crazy, identifying pictures in books, pointing and asking for things. She will repeat anything we ask her to. Brooks and I understand everything she says, but we might be the only ones. She has her own little language a lot of the time.

She is at the peak of her stranger anxiety. Especially with doctors and nurses. She screamed at both appointments this week. She also hates to be away from Mommy at any time. When we leave her in the church nursery, she gets pretty teary-eyed, too. We have left her overnight a couple of times, and she's done well, though. I love that my baby loves me. I know it won't be like this for long. I do want her to be less wary about going to church and being left for a little while. I am going to be putting her in 2K two days a week next fall! I think it will be really good for her. She always asks to play in AB's classroom every time I drop her off/pick her up.

Last night I went through EK's closet and organized all her clothes that she cannot yet fit into and I put all of her too-small stuff into a box. It's too bad that I can't save anything for our baby boy. I mean, I don't want him wearing pink, but we don't have anything blue, or even gender-neutral. I guess I need to do some shopping soon. The next 18 weeks are going to fly.

Wordless Wednesday

18 Months Old!

Yay, my sweet girl! You made it to eighteen months! What a big girl you are.

Playing in the Georgia snow. I totally doubted the weather man, but we got a few inches, at least!

Emma Kate is officially eighteen months old today. She's such a joy in our lives and she's learning more every day. It is so fun to watch her just live life. I am so thankful for the blessing of her and don't take one day with her for granted. Thank you, God, for our precious, happy, funny, beautiful, THRIVING Emma Kate!

Let me first say that this child does not stop. She is on the go from the time she wakes up in the morning until she goes to bed at night. She will not sit still for a movie or even a book. She's got things to do! Lately I feel like EK's vocabulary has taken a big leap. She's saying lots of little words and imitating pretty much everything her big sister says and does. Right now, The Little Mermaid is a pretty popular movie/character at our house for Anna Brooke, so I hear a lot of Part of Your World being sung by both girls. EK doesn't know all of the words to the song, but it is so precious to hear her say some words like, "world," "sea," and "Ariel." 

She absolutely adores babies and baby dolls. In the girls' playroom, we have a big bin full of baby dolls which EK will go over to, pick one out and "wock" (rock), "huck" (hug), and put to "sweep" (sleep). It warms my heart when I see her loving on her dolls. She is such a loving little girl, and I know she's going to be a wonderful big sister! I can't wait to teach her how to love her little brother or sister. Whenever we are out somewhere and she hears a baby crying or sees a child, she gets so excited and says, "bay-bee!!" 

Emma Kate can point to and say most of her body parts, especially ones on her face. Like, nose, eyes, ears, hair, mouth, teeth. Speaking of teeth, she's finally getting some in. For the longest time she's only had her two bottom front teeth. Right now, she is getting in about eight teeth, from what I can see. Poor thing. I am happy for her, though, since these teeth will make it a lot easier for her to chew up food. 

We have finally weaned EK from the bottle. I was just giving it to her at night and sometimes before her afternoon nap, and it was really the only way that she would drink milk. For that reason, I was really hesitant to take it away from her. However, she has done awesome since I took it away for good. The first few times I didn't give her a bottle before bed, I'd sit down to rock her, give her the paci and I'd hear, "bob-ble?" It broke my heart. It took her a bit longer to fall asleep those nights, too. I have found that giving her a snack before bed helps her a lot. She's also drinking milk from a cup now, too. Most of the time, I try to add some Instant Breakfast powder to it. She could still use the extra calories. She won't take Pediasure at all, so I have found that this is a good alternative. 

Right now, EK weighs about 18 pound, 12 ounces. She's still small, but she is gaining weight. That is all I am concerned with. She has a ton of energy during the day, so I know she's getting enough calories. Right now she's receiving Synagis once a month, I think March will be her last injection for the season. We have a home care nurse come to the house to give her the shots, which is nice. She gets one in each leg and I am sure they are painful. But so far, she hasn't had any major illnesses, so I am thankful that they seem to be working.

EK's next cardiology appointment isn't until March 16th. She's being seen every three months and every six months she has an echo done. At our last appointment back in December, Dr. Cardis informed us that her heart looked really good. Her heart function is great! In fact, he said that Emma Kate is "what we want our HLHS patients to look like" and that "she is best case scenario." That was a good feeling. We have every reason to hope for her!

A little over one year ago, Emma Kate had her Glenn. Little did we know, she would be spending a long stretch in the hospital. I wish I could go back and tell myself that. I think I expected her to be in and out after surgery. I also wish I could tell myself that in the end, she would do great!

Just reflecting today, I am so thankful for Emma Kate. She is such a blessing. I am also so grateful for the wonderful people who have taken care of her: her cardiologists, nurses and especially Dr. Paul Kirshbom, her surgeon. Mostly, I am so thankful to God, who has performed numerous miracles in Emma Kate's life.

Favorites

I thought it would be fun to share some things about my growing little Emma Kate. She is developing into such a sweet toddler and I just love this age! Sometimes I forget that muffin is fourteen months old because she's still such a tiny thing. But she is getting to be a big girl, and I love it.

Emma Kate is a very opinionated little girl and she will let you know exactly what she wants. She communicates very well, even though she doesn't have a very large vocabulary, but it is growing. Here are some of the words she knows how to say:

• 
  
  Mama
• 
  
  Dada (although she calls him Mama most of the time!)
• 
  
  Book (for her sister, Anna Brooke)
• 
  
  bubble
• 
  
  bye-bye
• 
  
  baby
• 
  
  yum
• 
  
  joo (juice)
• 
  
  ba-pap (backpack--thank you, Dora)
• 
  
  ow (out)
• 
  
  go
• 
  
  poo-poo
• 
  
  uuh-oh (she loves to say this whenever she drops something)
• 
  
  chee (cheese)

She can also sign for "all done" and "more." Every time I ask her a yes or no question, she shakes her head no or nods yes in response. Sometimes I don't expect for her to answer me, but I think she understands more than I realize.

And speaking of "chee," here are some of EK's favorite foods:

• 
  
  cheese
• 
  
  yogurt
• 
  
  oatmeal
• 
  
  waffles
• 
  
  cheese eggs
• 
  
  blueberries
• 
  
  apples
• 
  
  cheerios
• 
  
  graham crackers
• 
  
  goldfish
• 
  
  chicken
• 
  
  spaghetti

She can be really picky, and at times I worry that she's not getting enough to eat. Sometimes I kind of get desperate when she doesn't eat much--she also loves (ACK!!) chocolate chip cookies, donuts, and french fries, all of which I hate that she has already tried. Yes. I'm doing what I can to pack on the pounds.

Emma Kate always seems to have plenty of energy, though. She loves being outside, especially if I am pushing her in a swing or on a trike. She also loves the merry-go-round and slide. She enjoys rides in her stroller, but is aching to get out and crawl around (no, she's not walking yet) after only a few minutes. But she can crawl like it is nobody's business. She is really fast! Seriously, it is hard to keep that kid contained. While we were visiting my parents recently, she climbed up and down their staircase nearly every day. She was really good at crawling up and down the steps. She's also fearless (which kind of makes me nervous) but I love that quality about her.

Another thing I love is that she is totally obsessed with her big sister. She does anything and everything to get that girl's attention. It melts my heart when they give each other kisses before bedtime, or when AB asks if she can hold Emma Kate and "carry her like a baby" (even though that consists of her trying to pick her up by the neck). They both share a love for Blue's Clues (Emma Kate points to the TV and says "Boo" when she sees Blue) and Backyardigans (she always recognizes Pablo or "Pa-bo" as she calls him), but I am really excited to see how they will play together when they are a little bit older. Right now, EK's favorite toys are her baby dolls with which she loves to kiss and rock, blocks to throw right back into their container, and books.

I am so thankful that God created this little blessing and let me be her Mommy. It is such a joy to watch her grow into the little person she is becoming! We are so grateful for you, Emma Kate!

This would be the part where Emma Kate waves bye-bye and then blows you a kiss!

Fourteen Months!

My big girl!

Party Time!

Emma Kate's birthday was awesome! Thank you for all the sweet comments and birthday wishes! Here are some pictures from her special day and from her birthday party!

These were taken on her actual birthday.

Can you tell she enjoyed her cupcake? It was her first time eating chocolate. Or cake for that matter.
We had a joint birthday party with my sister Erin, her husband Josh and our little nephew, Jackson. (His birthday is today). Since their birthdays are only one week apart, we thought it would be fun to celebrate together. And it was--I have proof!

Enough already!! I need my cake!

I'll take that, thank you!

Check out the hair.

Sweet birthday girl.

(I really wish Jackson's eyes weren't closed in this one.)

Erin took this one. Emma Kate was seriously digging into her ear with her thumb. I ended up getting pink frosting out like 3 days later.

So thirsty!

Happy 1st Birthday, Emma Kate!

We are so excited to celebrate Emma Kate's first birthday today!
Enjoy the slideshow I made (and be prepared, its about 7 minutes long!). Make sure your speakers are turned on.

Make a Smilebox slideshow

Birthday Wishes

We are so thankful to all our family, friends (new and old) who have traveled this journey with us for the last year. You are part of Emma Kate's journey, too! If you would like to email or comment to send a birthday message to Emma Kate, that would be awesome! I am going to get this blog put into book form for her and I think birthday wishes would make a great addition to the book. Thank you for all your prayers for Emma Kate during the first year of her life!

Some New Skills

Emma Kate is almost one! I can hardly believe this! To see how far she's come is something amazing and I am so proud of her. Lately she's being doing great with "catching up" on her skills. We recently had our bi-monthly visit from Beth, who evaluates EK's progress. She told me that Emma Kate is completely on track and right where she is supposed to be developmentally.

EK is crawling around like crazy now! She goes into every room in the house, puts everything she sees on the floor in her mouth, opens every drawer within her reach. She is also pulling up on furniture and cruising. It's hard to keep up with her now!

Fever, Fever, Go Away

Very early Sunday morning, Emma Kate woke up feeling very hot to me. So I went into the bathroom and took her temp. It was about 100 degrees. I figured she was teething, and wasn't too worried about it. So I fed her, gave her some Tylenol and then put her back to bed. The fever persisted all day, so I kept giving her Tylenol and gave her a lukewarm bath later in the afternoon. She seemed happy as she normally is, maybe a touch more tired, though. Yesterday morning, she woke up and was hot again... all day! Because she's teething, I wasn't really concerned until her fever spiked after her nap. It was up to 103! That got me a little worried, so I called her pedi's office, and they said it was probably just a fever virus. She isn't having any other symptoms. (No runny nose. No cough. She's happy. She's eating fine.) But her fever persisted all day. When she woke up again feeling hot this morning, I decided to take her in to see her pediatrician.

It actually worked out perfectly, because I already had an appointment scheduled for Anna Brooke to see the doctor, so took both girls at the same time. Dr. Stone examined her--ears, eyes and throat look clear. The nurse came back in and got a urine sample and drew blood from her arm. Emma Kate screamed during this entire ordeal! Anna Brooke was the best big sister and kept saying, "Ssshhh! It's going to be okay, Emma Kate. It's okay." (Just precious! I wish I had been able to record that somehow.)

Dr. Stone said the white cell count in her blood looked fine, it wasn't elevated at all and her urine sample didn't show any signs of an infection. So, what is going on? We have no idea. It is a mystery. Most likely it is just a virus that is pretty common for any child to get. I am glad that Dr. Stone took a look at her blood, though. Potentially, she could have bacteria in her blood, which is a sign that there is an infection in the lining of her heart or on a heart valve. Apparently, this is not the case. The pediatrician's office is going to keep an eye on the blood culture to see if it "grows anything." And they'll call if it does. I am probably making this sound a lot more complicated than it really is. Basically, right now we are just waiting. Waiting for the fever to go away and waiting for the blood culture. (Dr. Stone predicted it wouldn't grow anything based on her other symptoms.) If her fever lasts for 2 more days or she gets worse, I'm supposed to take her back in.

I think EK will be fine. In fact, she just woke up from her nap and she doesn't feel hot. And its been awhile since she's had any Tylenol. That won't stop me from saying my prayers, though.

Catching Up!

Whew! It's been an eventful month. I'll be honest, it will be hard for me to remember all the stuff Emma Kate has done. I can't believe it has been this long since I updated. As a matter of fact, I did sit down a few times and tried posting, but didn't have the time. We have been super busy!

First of all, Emma Kate is now ELEVEN months old! As I say every month, I can hardly believe it! We are so blessed with her and very thankful for the last eleven months she's been in our family. This month she has made some great strides in her development, including getting her first tooth, crawling and pulling up on stuff, plus she's doing a whole lot of talking! Her favorite thing to do is to say "bye-bye" and wave her chubby little hand in sync. (Yes, I know I said chubby. And to the layman's eye it may not look that way, but compared with how she was two or three months ago, you'd agree. It's chubby!)

Speaking of weight, EK now weighs 15 pounds, 8.2 ounces, according to the scale at the cardiologist's office today. She's gained a lot since she was there four months ago! Even better news is that Dr. Law did a quick echo and said her heart function was really good. Go Emma Kate! Her sats were 80 and everyone kept commenting on how great her color is! And of course, she was showing off her waving and saying bye-bye skills to everyone we saw.

Emma Kate & Daddy @ the cardio appointment

Last month, we spent a week-long trip visiting one set of the grandparents, Kiki and Lito, in Georgia. It was so fun to get to play outside and swim any day that we wanted to! Emma Kate loves the water, and I cannot believe I didn't get a picture of her swimming. It was so precious to watch her splashing and laughing! A couple of weeks later, we drove all the way to Virginia to visit Nana and Papa. It was the longest trip E.V.E.R! But well worth it, of course! We had a few setbacks on the way and didn't get there until like, 2 or 3am, I believe. We had a great time just hanging out, walking to the park in my parents new awesome neighborhood, and doing some shopping. My sister and her son (who is the same age as EK) were there, too, so the babies had lots of fun together.

Laughing with her cousin, Alyssa!
Emma Kate & Jackson playing in the pool!

On the way home from Virginia, we made a stop in Durham, NC and got to meet our heart/blog friend Charlotte and her sweet family for the first time! It was so much fun to finally see one another in person! We had a yummy breakfast at Cracker Barrel and got to sit and chat for awhile before getting back on the road. I really hope we can do that again!

Emma Kate & her heart sister Charlotte!